Name :     Jennifer

E-mail :

Adult:   40 years old  

Location:  Western Massachusetts

Area(s) affected: 

Personal History:


My name is Jennifer and I am 40 years old.  I grew up in Western Massachusetts. I personally became aware I had Melorheostosis when I was in Radiography school, at 29 years old.  I then went back to my medical history and found it was diagnosed as early as 15 years old, on radiograph.  I was never told.  When I was 15 I slipped, twisted my leg a bit, hurt my knee, and needed to have surgery.  I had lateral reticular release. 

My right femur on radiograph has classic “candle wax “ appearance at the proximal head traveling down to the distal end and affecting the patella as well.  I have soft tissue “bumps” that are visible, slightly lighter, covering the entire posterior aspect of my upper and lower leg.  Also, atrophy “deformity” of the appearance of my leg, especially right above my knee on lateral aspect of thigh, which is very painful to be touched with any pressure.  My right leg is approximately 3/4 in shorter than the left, and right foot is 1/2 size larger than left. I get back pain and hip pains due to leg length difference.  I get random shooting pains in my right leg in various places, mostly stabbing pain in my right hip.  I have a lot of stiffness and dull pain in this leg.  I usually limp for a few steps whenever I get up to walk.

Not a single doctor I have ever mentioned this to, has ever heard of it.  Not any PCP, Homeopath, Dermatologists, Orthopedic, Nephrologist, and many others through the years. My symptoms have been manageable thus far. I haven’t had to seek medical attention.  Actually just one time, for hip pain, my PCP sent me to the orthopedic, but because he never heard of it he was not able to help.

Currently, I am aware I have this.  I live a very normal life. I do not know if it affects any other area of my body. I do not have any medical supervision for this condition.

Thank You

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